Alternate Planning

It is important for my patients to be educated about their disease.  I try to teach by explanation, instruction and answering myriad questions.  The Internet is wonderful; support groups are great and second opinions help fill gaps of knowledge.  I recommend appropriate reading.  However, Salina may have misunderstood my urging or perhaps just taken things a bit too far.  She wondered if I knew a good book or pamphlet, which can help her better plan. Plan better for the afterlife.

Salina has a chronic cancer with a good prognosis. She can expect to live many years and she will feel well most of the time.  However, Salina informed me that the waiting is driving her crazy.  Therefore, instead of reading about exercise, the immune system, better nutrition or treatment choices, she has been collecting and reading tomes on end-of-life, the process of dying and estate planning.  As a “fallen” Catholic, Salina has become frustrated that there are apparently no practical guides for what to expect and how to be organized, after she has died.

After a brief moment of shock, it occurred to me that this raises several issues.  The first is that despite successful control of her cancer, Salina has lost hope or at least lost an excitement for living.  I have failed to convince her, to reassure her, that she does not need to be concerned that everyday will be her last.   Cancer patients,  “survivors” or not, often, maybe constantly, feel that dread in the back of the head, that anxiety, that the disease will blossom.  In its extreme form, known as Damocles Syndrome, this fear can dominate every moment, and suck away any chance of joy.

Salina has gone beyond this feeling.  She does not necessarily dread the return of the disease; rather she expects exploding cancer at any next moment.  She has achieved a calm acceptance, an “understanding,” that death will arrive, and arrive very soon, despite the reality that unless an unexpected calamity occurs, she has years of “healthy” life ahead of her.  She is not truly depressed, but instead has come to closure, even though the door is still open.

This is a view I can probably address.  With careful education, starting from the beginning about her disease, its biology, its process and its prognosis, I believe it will be possible to convince her, at least most of the time, that she will be “alright,” for the foreseeable future.  The trick will be to do this without ordering piles of tests designed to “prove” she is healthy, as that likely will backfire. The trick will be to explain the difference between her illness and that of others who have not done well.  The trick will be patience, education, gentle repetition and listening.  The passage of time itself, will mend.

The other problem is more complex.  Once she has completed the basics, an Advanced Directive, Living Will, Medical Power of Attorney and perhaps a POLST, it should be fairly easy to convince Salina to stop collecting discourses about death.  I would rather she focus on subjects about which she may have more control, such as diet and therapy.

However, a guide to the afterlife may be harder to either find or explain the absence thereof.  One might suggest she read the classic sources in this area, Bible, Torah, Qur’an, or Bhagavata, but it is likely, given her history, she will reject this recommendation.  Perhaps she would be willing to meet with a religious or faith leader, although again Salina may be apposed a “conventional” guide.  There are support groups that include women with her illness, but someone who wishes to focus on issues after the end may put off the average collection of cancer patients.

Clearly, it is beyond the oncologist’s purview to provide answers for infinite tomorrows.  Nonetheless, while I will seek advice in this area, perhaps from spiritual leaders to whom I personally turn for inspiration, I wonder if for Salina there may be peace in art, nature and the beauty of life.  Might she find some connection to forever in the study of paintings or statue, the joy in music or poetry, solace in a sunrise, the brilliance of fall or the coo of a dove?  Perhaps there is hope in the warmth of others at the holiday table or in the laughter of a child.

Maybe for Salina, perhaps for all of us, though we will never see over the earth’s curve, beyond the sunset, there is hope in the beauty and power of this moment, this wonderful world in which we live.  Perhaps, the best guide to eternity lies in the miraculous vision of the human heart.



  • Mary
    Hi. Don't recommend a traditional Navajo shaman, as they don't believe in an after life. The rites are healing ceremonies for the living.
  • Liz
    LOL!!! You didn't say how long she has had cancer, if it is within the early years I may have an explanation for her behavior... I do think some of us (that would include me) do some grieving in advance of potentially not having a normal life span, even if we know that we may be around for a long time. Part of that is thinking about that stage of life. As a lapsed religious person she may also be thinking about how to get that part of her life remediated . Of course that is a question better served by her priest at whatever parish is her parish rather than you (as she, at one level no doubt knows but may be reluctant to go through whatever it is catholics make you go though to get back into the fold and is perhaps looking for an easy short cut LOL), however it sounds like getting cancer served as a wake up call to her about how she is living her life and she is focusing on making sure she goes to heaven when she eventually dies rather than purgatory or hell (or whatever she currently believes). So as a lapsed religious person she may be thinking about how to get that part of her life remediated . It also takes a while to wrap your brain around cancer. I found it was qualitatively different when I was diagnosed with a cancer that has no cure vs my previous two ones in terms of my adjustment. This one has no cure and increases the odds my lifespan will not be normal. It also takes a while to wrap your brain around cancer even if the odds are high you will be cured (my first two). I found it was qualitatively different when I was diagnosed with a cancer that has no cure vs my previous two ones in terms of my adjustment. Since this one has no cure it increases the odds my lifespan will not be normal. While I wouldn't call it waiting to die, my initial response included considerable anxiety, my on going response 3 years after the dx still includes struggling to deal with how to live knowing you are likely to die early and occasionally thinking life would be easier if you just died (not in a suicidal way, just as an observation). At one point I went looking for life span reports in research articles. At another point I tried to tie my markers and continued screwed up blood work with which side of the median life over all survival I would fall on. This kind of in your face uncertainty is hard to learn to live with. At one level we all know we will die, but usually you can ignore that because you don't have something in your life that smacks you on the head with the "death" bat reminding you that you won't/might not live as long as your longest lived relatives (in my case 104 was the oldest - my great grandfather - and multi generational both sides of the family a ton more who lived until 87-99 including people born in the late 1800's so different level of medical care - clearly I have longevity genes - well except for also having cancer). So on one level I completely get her anxiety. I know I made a dark humor comment to my oncologist (that he did not find funny and it was meant as humor even though it was true) early on that I guess it now didn't matter that I would never have enough money to retire. Of course now that I am facing homelessness unless I can find a job (this is the last week of my unemployment compensation) I struggled with do I leave my retirement alone or do I take some out to live now. I have finally decided I can't gamble on dying before retirement (even though it is likely unless some miracle treatment comes along - but who knows might happen) and it would be easier to be homeless while younger and not in the middle of dying of cancer. So yeah - waiting to die can be something that crosses your mind in the process of adjusting to this kind of dx. Sounds like this woman would also find helpful a counselor who isn't intimidated by talking about death (as many seem to be) to talk about issues this dx triggered with her. By working through thinking about death she will probably then work her way back to thinking about continuing to live fully. Been there done that have the t-shirt. Oncologists probably also need a PhD in counseling. Also with my first cancer I think it was about 4 years before I didn't think about cancer at least once every single single day. I am not there yet with cancers 2 and 3 (both dx'ed in 2010, chemo through 2011, check up last week and a new ambiguous nodule was found where one should not be that we are going to watch so a brief regression into anxiety). Learning to live with the uncertainty over when I will die of cancer (which is a trigger for scan anxiety in my case, and occasionally thinking that life would be easier if I were just to die now rather than deal with whatever what ever it is that is currently discouraging like the state of my finances, unemployment and impending homelessness) has caused me to think about all sorts of things that I would prefer not to or would rather think about when I am, say 102+… And also caused me to ask my oncologist (much to his discomfort) at my last visit to explain to me exactly what it is about this particular cancer that causes you to die (how does it kill you I believe was my exact question, done in front of his trailing student which no doubt shocked him based on the expression on his face) if, in fact, you die from this and not something else unrelated or a treatment related side effect. He did not want to answer that and I had to ask several times and really push him to get an answer. For me, this is part of the process of adjusting to this diagnosis so I can go on living as if I will live forever knowing that this will not be the case. Sounds like she is in the middle of that, never mind that her request no doubt caused you to both shake your head in disbelief and chuckle a bit once you were not in her presence. Of course had she stopped to think it would have occurred to her that a priest would be the one to ask…. but hey you were handing out all sorts of information, surely you had info on that too LOL, after all you are a major traffic director on this particular road and you were handing out "maps". My dad was a minister who had major complications from post polio syndrome and got a hospital caused infections he would die of. He said, shortly before he died that he no longer knew if there was an after life but he was ready to die (and he then chose to stop treatment, pull the breathing tube…). My sister told him that if possible come back and leave a sign that there is an afterlife. She was completely serious. Hey I want to know too… disconcerting that my dad, who was a minister, no longer knew what he believed. About two years before his death he spent a lot of time crossing all his T's and dotting all his I's with the practical logistics and psychological impact of his end of life, talking with one of my aunts who had terminal cancer about death and dying (that was a mutual conversation as both were thinking about it), assisted suicide (they both belonged to the hemlock club), end of life preparations... He waited until late in the game (at least I presume he did - he had polio before I was born), but I do think at the point you confront your own mortality in a way that isn't abstract, it triggers thinking about this kind of stuff. Sounds like her diagnosis was the trigger for this women, whether or not she will die now or in the distant future. Your patient's request is a hoot in that she asked you (but also speaks to the fact that you are treating the person, not just the disease) rather than a religious person since she clearly still believes in an afterlife, lapsed catholic or not… but I understand it… Personally I think this is one rather "normal" path some go down when confronting their own mortality. You just may not hear about it much. I am sure my dad heard about it a lot in his job (he was the minister at his church who did all the hospital and home visits). Seriously though, maybe hand out a brochure that talks about the kinds of issues really having to confront your mortality can trigger (and that for some this is never triggered and that is normal too, or they are so afraid they stuff all emotions relating to this – after all if denial works for them who I am I to criticize?) and that adjusting to a cancer dx, whether it is potentially curable or not, means learning to live with uncertainty in a way that you can continue to live fully (which is sounds like she is struggling with since she is waiting to die) and that is a process that takes time. Lots of time. And you can cycle back through the stages of adjusting to this when you hit bumps in the road, get discouraged… But regardless of cancer, the sun still comes up in the morning and each day you wake up to see that gives you another chance to live your life fully.
    • Liz
      Opps sorry for the duplicated sentences in there. I had copied and pasted from when I wrote in this box to word and the box slowed down and missed where I copied part of a paragraph twice - scroll wasn't working too well - and when I proofed it I missed it.
    • Bridget Ryan
      Love your spirited approach. Thanks for sharing your experience and point of view.
      • James Salwitz, MD
        Thank you very much, jcs
  • Bridget Ryan
    About 6 months after my first cancer diagnosis and completion of the recommended course of treatment, I was asked to fill out a health assessment survey. I noted that I was in poor health, which confounded my physician. During the course of my treatment I had lost weight, started running 10K races, biked 10 miles each morning, worked full time and generally led a very healthy lifestyle that was somewhat more disciplined than my pre-diagnosis lifestyle. I had always been physically fit, but the diagnosis sparked some additional workouts. My thinking about the assessment was simple --- How could I have cancer and NOT be in poor health? Over these past four years I have adjusted that thinking, and my activities and choices have remained pretty healthy. It was a huge disappointment to have a new primary diagnosis just 2 years after the first, but I continued my usual good diet and activity routine and I'm doing well again now. I guess I have compartmentalized the notion that cancer is probably my fate, and I just have to deal with it as best I can until it finally overcomes me. It's a pragmatic approach balanced between fatalism and that other extreme, the 'golden light' and colored ribbon stuff I have encountered. Cancer is a miserable experience through and through, but I have made it this far and hope for more good days ahead. I very much appreciate opportunities to talk about this with the medical oncologist I see, a person who helps me look at things with a sense of realism as well as hope.
  • A book recommendation..."Enjoy Every Sandwich - Living Each Day as if It Were Your Last" by Lee Lipsenthal, MD. Dr. Lipsenthal wrote this book between the time he was diagnosed with cancer in July 2009 and the time he died in Sept 2011. He walked his talk. Andrew Weil, MD wrote this about the book... "Often patients given a terminal diagnosis reach a surprising, transforming conclusion - you have to be ready to die to embrace being alive. But Lee Lipsenthal tells his story with such intimacy and humanity that this paradoxical fact can be accessed even by those who have not (yet) leaned out over the abyss. To deny death is to deny life. Read 'Enjoy Every Sandwich' to know why."
  • D Someya Reed
    I assume there’s much more to this story but from just what you’ve said here this may not be what you’re thinking it is…closure and acceptance of death, loss of zest for life or waiting for her disease to explode…as medical conditions needing to be dealt with. These symptoms may be involved no further than her being a “fallen” Catholic questioning her beliefs and likely an obsessive planner. If I’m right, I may understand (or at least empathize) with her feelings because I’m pretty much doing the same thing but in a somewhat different way and I don’t feel that I’m in need of any medical intervention although there’s a certain group of people that probably think so. I’m neither a “fallen” anything or an obsessive planner, in my opinion. I do have an obsession to learn things so that I will (or hope to) always know what to do in a given situation. I don’t actively plan steps 1-2-3 (as would a planner) but I always want to know what my options are because then I can pick one, if needed…more MacGyver-like than planning. My wife was a planner and loved that, as she put it, I always had a plan a, b & c. I didn’t, I just knew what our options were and it gave her a sense of comfort and security. As to the “fallen” part, the other end of my obsession is “what if.” All of us have some belief of what happens to us after we die whether it be eternal heaven, eternal nothing or something in-between. I have my own opinion but…what if I’m wrong? So, I started to read up on it. Same, quite possibly, as Salina. But unlike Salina, I don’t have the desire to plan out that afterlife, step by step; however, I would like to know if I have choices. Then it becomes a bit more complex because “what if” whatever happens to us is contingent upon something we did or didn’t do when alive? What then will my choices be? Now this is something I never thought to ask our oncologist. Although he was the harbinger of death and by that I mean only that he was the one who informed us of its proximity (and not any of the negative connotations), an oncologist is not really the right person to ask about this even though oncologists usually have an apparent unending supply of pamphlets on a plethora of topics that for some you might wonder, “Why do they have that here?” So to get my “what if” answered, I contacted every religious denomination I could think of and asked them what I thought was a simple question…”Based upon your religion’s beliefs, what happens to us after we die?” Funny thing was…not a single person gave me a straight answer and this WAS in their area of expertise. My conclusion…nobody knows, just as I'd thought before I’d started. I continue to read many, many books, articles, etc. on death & dying, afterlife, etc. and a lot more. There actually is some fascinating literature on the subject. To be honest, I do have a reduced zest for life after the loss of my wife. However, she gave me (and I have) so many things yet to do that I will likely die before I can finish them all. I long ago accepted that I would die someday and I lost all fear of my own death when I held my wife as she breathed her last breath. As to what may take me down some future day, I don’t really care (nor will I worry about it) even if (or when) it is a cancer “exploding” inside of me. Just like Salina, I am sad but not depressed. I am resigned but not closed off. And for me, if I can help others from what I have learned and will learn then, as they say, I will have left things a little better for having lived (or however that goes). But most of all, if I find myself in an “afterlife” Catch-22, a Hobson’s Choice, a Morton’s Fork or whatever, I want to know my options or any loopholes available to me so if there really is a chance, however slim, that I may be reunited with my wife, I won’t miss it. Is there really anyone truly capable or in need of treating this as a “condition”…doubtful.
  • It's true that nobody alive 'knows' what happens after we die, even though some folks have had Near Death Experiences. Almost all of those have lasted only minutes; nobody knows what happens after that. But lots of interesting and potentially useful books have been written about it anyway. From my bookshelf: 'What Dreams May Come,' by Richard Matheson; 'The Beginner's Guide for the Recently Deceased,' by David Staume; 'You Only Die Once,' by Margie Jenkins; 'Deathing,' by Anya Foos-Graber. In working with hospice patients in the days and weeks before their lives ended, all four of these books have proved useful in helping them surface their fears and hopes, and to have the conversations they need to have (in person, by phone or e-mail, or even in imagination) to feel complete with the challenges they have faced in life. Warm wishes for Salina to find the blessings available during both her living and her dying. And thanks for being the oncologist who cares to ask about such things.
  • You might suggest that she do an autobiography or personal memoir. That way she can get in touch with the memories, the joys, the events, and the people who have given her life meaning. If she has family, they might truly appreciate such a document after she is gone. And she could focus on her life rather than her death.

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